Goodbyes

Missing little Kayla

"Mummy, am I going to die?" These are heartbreaking words that no parent ever wants to hear, or ever finds easy to answer.

But when their 5-year-old daughter was suffering from Wilms tumor, a childhood kidney cancer, Sandy and Chuck felt they had to reply. They also had to grapple with many decisions as Kayla's health declined, including how and where to say goodbye. Through the ordeal, the couple realized the importance of honesty, community, and making lasting memories.

Kayla was diagnosed with Wilms tumor in 1998 when she was 3, and it had already spread to her lungs. She went through six months of surgery, radiation, and chemotherapy at Massachusetts General Hospital, and then went into remission. The family even traveled to Disney World to celebrate Kayla's fifth birthday. But shortly afterward, they learned that her cancer had come back. After three more months of treatment, the doctors gave them the devastating news that Kayla could not be cured and would probably live only a few more weeks.

Sandy went to a child psychologist to better understand what her daughter was thinking and feeling. She learned that even when Kayla asked, 'Mummy, am I ever going to see you again?" she didn't really grasp the meaning of forever. When the couple accepted that Kayla's time on Earth would be brief, they knew that hospice care would be best.

As Sandy recalled to me:
"I strongly believe Kayla lived those nine last weeks because she was home, where she felt safe and secure. We were able to keep her routine, like taking baths and sleeping in her own bed at night; we even took her with a morphine pump to Toys R Us.

"During those weeks, we made memories. For example, Kayla and her younger sister, Amanda, worked with an art therapist. It took Kayla about three weeks to finish painting it, but she made a clay mold of her hand. I never imagined that the mold of her hand would be so precious to me. Amanda made one, too, and now they're side by side in our home."

At the end, Kayla was on the couch in the family's den. Her last request was to have family members in the room, and they came. She had started to become blind as her body shut down. Being feisty as ever, Kayla instructed people on where to be: "Aunt Carol, I want you here. Who is this? You go over there." And they held her.

"I thought I had prepared myself to say goodbye," Sandy said. "We knew what we wanted for Kayla's funeral arrangements, we knew everything. But when she was lying on our couch and everybody was around her and she took her last breath, you never can prepare yourself for a goodbye like that. Never.

After Kayla passed away in May 2000, Sandy couldn't help but question why this had happened. "People say things happen for a reason," she reflected. "But to this day I still wonder, Did she have to lose her life?"

The couple bought a home in New Hampshire, and Sandy felt comfort there. She could see the mountains and Lake Winnipesaukee, "and I knew that was what Kayla was looking at every day. I had gone to that area all my life, but it wasn't until Kayla passed away that I saw it in a different way. There are times when I say, 'Kayla, thank you so much for this beautiful day,' and there are other times I think, 'Damn it, why aren't you here?'"

Some tips from Sandy when a child is dying. . .

Get help: Sandy assigned jobs to people in her family and neighborhood. Two relatives made sure the driveway was plowed. A neighbor brought breakfast every other Thursday. Someone came to the house every day, for nine weeks, to answer the door and phone so Sandy and Chuck could spend time with Kayla. Two sisters-in-law made a book about Kayla's life.

Remember the siblings: Near the end, Sandy and Chuck arranged for Kayla's younger sister, Amanda, to spend a few hours each day with a relative or friend. On the day that Kayla died, Amanda went out, and when she came back, the house was filled with grieving family and friends. "We thought we were doing what was best for Amanda by protecting her, but she never got to say goodbye," Sandy told me. "If I could do it over, I would have asked her if she wanted to stay home when Kayla died. She was 3-and-a-half, and I didn't giver her enough credit. I should have given her the choice."

Saying farewell to others

Too often, we don't have the chance to say "goodbye." A loved one may die suddenly or take an unexpected medical turn for the worse. A doctor might not share the person's prognosis with the family, leaving no time for farewells. In some cases, we hesitate to have such conversations because we're afraid that will hasten our loved one's decline or appear as though we've given up hope.

Losing someone without that "closure" may leave us feeling sad and cheated. But it can also inspire us to make different choices -- if we can -- in the future.

Stacy's parents died in a plane crash when she was 12 years old. They were returning home from a New Zealand vacation in 1974 when their flight missed a runway in American Samoa and exploded, killing almost everyone on board. Within days, and amid her grief and shock, Stacy and her brother had to say farewell to their home, friends, and Pittsburgh neighborhood, and move to a different city with an aunt and uncle.

"I felt so mad at my parents for leaving me," Stacy told me recently. "I reviewed everything my parents ever told me, trying to search for wisdom about to how to raise myself without them. There were 1,000 unfinished conversations. I kept waiting for my parents to show up and say, 'We were ship wrecked, and it's been terribly confusing, but you can resume life Number One.'

Now in her mid-40s and living outside Boston, Stacy has two kids of her own and has built a successful business as a parenting expert and corporate spokesperson. When she needs emotional shelter, she takes out her parents' pajamas from their special box, or puts on her mother’s thick, deep blue sweater with soft circles of color.

"Not a day goes by that I don't miss my parents or feel their absence," Stacy reflects. "The experience made me, at a very young age, take stock of how lives are summed up. I believe that people live on through those they have touched, and that we are walking candles to their memories."

Like so many people who lose loved ones suddenly –- whether through accidents, natural disasters, illness, war, suicide, or crime –- Stacy was deprived of the chance to tell her parents goodbye, thank you, and I love you. The shock of their deaths magnified her sense of loss, and it left her feeling guilty about the times she barked "I hate you" at her parents while going through adolescence.

Decades later, that loss propelled Stacy to make sure she said farewell to someone she cherished who had been seriously injured in an accident. This is how she described it to me:

"My husband and I had a very close friend, Marty, who was a local TV reporter and godfather to our kids. I don't know exactly what happened, but he fell off the back of a golf cart during a tournament in October 2000 and went into a coma. During the last week of his life, it was clear he wasn't going to wake up. I asked his wife if I could have five minutes alone with Marty. I stood by his bed, held his hand, and said, 'Marty, I have to tell you what a profound difference you have made in my life. You have touched it in so many ways.' He was mentally not there, but I felt I could tell him how much I loved him as a friend.

"It was incredibly comforting to have that closure conversation I never had with my parents," Stacy added. "I felt as though I had practiced it for nearly 30 years."

Remembering Geri

During her nearly 20 years with cancer, Geri taught everyone around her about making the most out of life. She did that even as she said goodbye.

I met Geri in the late 1990s, about three years before her death. She wanted to launch a newsletter for patients and families connected to Dana-Farber Cancer Institute in Boston; her goal was to provide news, inspiration, and hope -- and to encourage a spirit of advocacy.

Over the next few years, Geri crafted a series of editorials for the newsletter "Side by Side," in which she revealed her ups and downs with liposarcoma, a rare cancer that required multiple surgeries and other treatments. She urged readers to be open with their children about illness, reflected on the doctor-patient relationship, described her cyber friendships with other people facing sarcoma, and delighted in the companionship of her little dog, Sammy. As her health failed, Geri also shared her sense of loss.

Eventually, Geri opted to stop pursuing new treatments and to let the disease take its course. While she was still strong enough, she visited several hospices and chose a small, homey center in Wayland, Mass. When her body and heart told her that she was ready, she moved there.

I will always remember the peaceful atmosphere at the hospice and the way the staff spoke about Geri's "journey." At the time the language sounded almost hokey, but I soon realized that it was an accurate description of her process of weakening, sleeping, and ultimately dying. She got extremely thin, but she seemed comfortable in her room with a view of the snow and trees outside and surrounded by puffy pillows.

Knowing how much "Side by Side" meant to her, I wanted to help Geri write her final editorial. With her blessing, I visited her with pad and pen, and she slowly dictated an essay about hospice. She encouraged readers not to wait until it's too late to consider this option, and she described how being there was like being in her mother's arms again. "If you can die with dignity," she wrote, "this is the way to die with dignity -- comfortable, at peace, and with loving arms around you and feeling loved."

I typed up the piece and faxed it to the hospice for Geri to review. A staff member sent back a note that read, "Geri sends love and hugs and says article is just fine." Six years after her death at age 56, that message still hangs above my desk as a reminder of this strong, warm, and compassionate woman (and mother of two) who taught so many of us how to live, as well as how to die.

Shortly before the end, Geri whispered to me from her hospice bed that she wanted to be remembered. I took that as my personal charge to do whatever I can to continue her legacy. I guess that's what each of us wants, to know that our lives have made a difference. Geri's certainly did.

Consider this . . .

Everyone wants to be remembered. You can help someone who is dying know how and why he or she will be remembered.

Facing death with humor

"Hi, I'm Art Buchwald, and I just died."

This is the opening line of a video obituary posted on the New York Times' website (nytimes.com) shortly after the 81-year-old Buchwald passed away in January 2007. The line, delivered by the American political satirist with a smile and twinkle in his eye, is trademark Buchwald. During the interview taped six months before his death, he told reporter Tim Weiner, "I was put on earth to make people laugh."

Buchwald had a gift for bringing levity to serious subjects, including his own life-threatening illness. Anyone who has read "Too Soon to Say Goodbye" knows that.

The book –- one of 33 he wrote -– describes Buchwald's nearly five months at a Washington, D.C., hospice center where he went after his kidneys began failing. Buchwald received thousands of letters and a loving stream of friends, colleagues, and dignitaries preparing to say goodbye. They brought him rich foods and memories of his past –- from his days in a New York orphanage, to the Marines, to his remarkable life as a newspaper columnist in Paris and Washington, to his battles with depression. He recalls both his joys as a Pulitzer Prize-winning author and his sorrows about the mother he never knew.

Buchwald also writes candidly and, of course, with humor about all aspects of dying: picking out a cemetery plot, planning a memorial service, how to score a big obituary, the philosophy behind hospice (a service that, he says, gives you the opportunity to die with dignity), his decision to stop kidney dialysis, and what it was like to be a "poster boy for death." He jokes that he's working on his list of the "Five People I Don't Want to Meet in Heaven."

"I am known in the hospice as 'The Man Who Would Not Die,' Buchwald writes. "But in case you're wondering, I'm having a swell time –- the best time of my life. Dying isn't hard. Getting paid by Medicare is."

As it turned out, Buchwald's health stabilized, and he left the hospice and spent time on his beloved Martha's Vineyard, where he shared a summer home with his late wife and kids. He died peacefully in Washington several months later, but not before he had commissioned several eulogies that are part of "Too Soon to Say Goodbye."

A friend of mine who read my earlier posts suggested that I add some lightness to this blog, so I thank Art Buchwald for his gift of wit.

Do you know others who have faced death with humor? Please let me know at goodbyes@rcn.com.

A patient's goodbye

I never had the chance to meet her, but I know that Tabatha was a remarkable woman whose strength, faith, and hope in the face of excruciating pain touched everyone around her.

Tabatha was an African-American woman in her 30s who developed anal-rectal cancer that eventually spread. She was in agony as the tumor pressed against her spinal cord, and her medical team in Boston did everything they could to ease her physical suffering. At the same time, they were amazed by her ability to focus on the wonderful things in her life, not on what she had lost. "My arms are not wide enough for all the blessings I have," she said.

Several years ago I learned about "Tab" from Christie, a first-year Harvard Medical School student who spent four months shadowing Tabatha as part of a course on living with life-threatening illness. These two spiritual women came from very different backgrounds, but they connected powerfully with each other and became friends. Christie visited Tabatha's home and got to know her husband and children.

When it became clear that Tabatha's time was short, she said goodbye to family members who arrived from all over, and thanked her caregivers individually. She told people that she was at peace, that God was calling her and that she was ready to go.

Christie described their parting conversation at the hospital to me this way:

"I will always remember the day we said goodbye. I was sitting next to Tab's bed. She told me to pull my chair up as close as possible and lean my head in. She squeezed my hand as if she was the one trying to comfort me. Seeing Tab's peace and happiness in this moment that society usually views as so tragic, I felt like I, too, could be at peace. Tab made it clear that she wanted me to embrace life and rejoice at her new beginning. She told me how special I was to her. Then she said, 'You've been here every single day. Now you are my family.'

"I told Tab how grateful I was for the multitude of things she taught me. I said how much I valued our relationship, and how beautiful and strong and inspirational she was. I vividly remember walking out of her hospital room that afternoon, knowing that I had said my final goodbye to a woman of incredible strength and wisdom, and yet feeling like my life had been uplifted by doing so. I walked home feeling strong and feeling closer to God than I had felt in a very long time."

Christie explained how Tabatha volunteered to take part in the medical school course because she wanted to share her story with as many people as possible -- so they could learn from what she went through. As a result, Christie learned lessons she could never have found in a textbook.

"In her last few months," Christie told me, "Tab taught me more than what it was like to live with a life-threatening illness. She taught me what it was like to just live."

Finding the words

What do you tell someone whose life is nearing its end?

There is no "right" or "wrong" thing to say; it's a matter of finding a way to express your feelings and, hopefully, allow the dying person to do the same.

Many people don't want to talk about death. It's scary. It's sad. It's uncomfortable to discuss. Most of us aren't used to seeing people die, the way elderly relatives used to do at home, encircled by loved ones. We've come to expect a cure or treatment for just about every illness, and that makes end-of-life conversations less likely to happen.

Sometimes a critically ill just person doesn't want to "go there," and it is important to respect his or her wishes. On the other hand, Ned Cassem, MD, a psychiatrist and Jesuit priest based at Massachusetts General Hospital, has said that "death actually has the secret of life in it. If you confront death with somebody you love who is dying, out of that will come learning that transforms your life. It leaves you stronger, braver, calmer."

Anne, a Maine-based psychiatrist, had an experience like that with her grandfather, whom she adored. When he was dying, she went down to visit him in Florida, and they were able to affirm their special and enduring bond. This is how she described the goodbye to me:

"My grandfather was very ill, and he had a Do Not Resuscitate order above his bed. On the last day of my visit, I sat on his bed and said, 'I don't think I'm going to see you again, and I really want to tell you how much I love you and what you've meant to me.' He was very weak and nearly asleep, but he raised his head from the bed and looked at me with such clarity and depth. For a moment everything was quiet and his eyes seemed to grow huge. Then he said, 'You will always be a part of me.'

I told him that he would also always be a part of me, too, and that I would carry this love as long as I lived. This is one of my most treasured memories."

Here are a few ways to spark a farewell conversation:

Bring along a photo or other memento (yearbook, scrapbook, etc.) from the person's life and talk about it.

Offer to help the dying person write a letter to a child or someone else.

Collect memories or compliments from the person's friends and family and read them aloud.

Say something along these lines: "This may be the last time we see each other, and I wanted to let you know how much you mean to me." Or, "You've had an incredible life. Thank you for letting me be part of it."

The letter

It happens all the time: Once you start paying attention to a social issue, medical condition, or even a fashion trend, you notice it everywhere.

Since I bean focusing on goodbyes at the end of life two years ago, I've found stories around every corner -- at parties and conferences, through friends and colleagues, on the radio and at the movies.

Many of the people I've interviewed or observed carry warm memories of conversations with a relative, friend, or even patient whose time is short. But others harbor sadness, guilt, and regret for goodbyes that never happened, or words they felt came out the wrong way. Happily, I've also seen how many of these people have found ways to honor the person they missed and say farewell after the fact.

One of those people is Lynn. We met shortly after attending the funeral of my cousin, Alan, at Arlington National Cemetery in January 2007. Lynn happened to drive me to the airport after the reception and told me about his relationship with Alan, a career military man whom Lynn considered a friend and mentor. Alan was an Army lieutenant colonel who specialized in decoding radio signals, and Lynn was assigned to his unit in the mid-1960s. They traveled extensively in the U.S. and abroad, and Alan taught him many leadership and management skills. Later, they worked together at the Federal Aviation Administration, where Alan was security director.

Alan had developed cancer in recent years, and although Lynn knew he was seriously ill, he didn't have a chance to thank Alan directly for his support and friendship over the years. So soon after Alan's death in November 2006, Lynn composed a heartfelt letter to Alan's wife, Charlotte, to express what Alan had meant to him. This is how he described Alan's leadership style toward his Army intelligence unit:

"Alan wanted nothing but the best from all of us, yet he got this from each of us by leading by example and assuring that we all had fun along the way. In a military environment it would have been easy for Alan just to give orders to the rest of us and sit back and expect us to follow through. This was not Alan's way, as he worked alongside us to make sure we completed a quality job on schedule. He did this without sacrificing or compromising his authority. I really respected this technique and used it with success when I was put into leadership positions that came my way during my own career."

Lynn went on to recall family vacations, boat trips, and meals they had shared over the years. "I will deeply miss Alan," he wrote, "but my life has been profoundly impacted by him. I am sorry that the thoughts and feelings expressed in this letter were not communicated directly to Alan, but I believe that he knew of the respect and admiration that I felt for him."

Consider this . . .

You can say goodbye after someone has died by writing a letter of remembrance to that person -– or to his/her partner, parent, or child.

Some other ways to say goodbye: Attend the funeral or memorial service, post a message online, recite a prayer, carry on the person's work, or take part in a charity event to honor the person who has passed away.

Do you have other ideas? Please send them to goodbyes@rcn.com

Mary's last month

Diagnosed with a brain tumor in 1994, Mary spent half of her short life battling cancer. After the disease spread and it became clear that treatments were no longer working, the New Hampshire teenager moved into a special "comfort room" at Children's Hospital Boston. There, the spirited 16-year-old spent her final month with her parents and older sister, sleeping in adjacent beds.

Several years after Mary's death, her mother described this goodbye with me, recalling those last weeks as a gift to their family:

We had over 100 visitors, and many came more than once. Some people have said to me, "How could you do that at such a private time?" But Mary loved her friends and family, so it was very important to have them there. They needed it as well, to say goodbye to her. There was a community of people who loved and supported Mary, especially during the eight years of her illness.

When Mary would say she wanted to go home, we would tell her, "You are home because we're all here with you. And this is where we need to be."

Her primary nurse at the Jimmy Fund Clinic [of Dana-Farber Cancer Institute, where she received outpatient treatment] referred to her as the Energizer Bunny. Mary tried so many treatments and clinical trials, and she had some near-death experiences, but she would bounce back. This time, I knew she wasn't going to bounce back. But I don't know if she ever gave up hope. She told my husband that her quote was, "Live each day to its fullest and never give up."

Mary knew that after her death she would be with God, and she wouldn't have pain anymore. She had pain in her back, and the tumor was all along her spine and affecting her whole body; she was paralyzed from the waist down. During the last year of her life, when she was in a wheelchair, Mary took up painting. We found an artist who'd come to the house and work with her. Mary would sit and paint for two to two-and-a-half hours, doing landscapes and still lifes, even when she was on treatment.

Mary loved fashion and shopping, and the weekend before she died, she went to the mall. Her oncologist arranged for a nurse to go with us, and classmates of Mary's wheeled her around so she could pick out what she wanted. She bought a sweater and pants and socks; that was a really special treat.

She did an amazing thing on the day she died [in November 2002]. I was running around doing errands, and she went to the lobby of the hospital with my husband. She saw flowers for sale and said, "I want to buy those pink roses for me and mom," and so when I got back to the room, there were those pink roses. That was Mary, always thinking about other people.

She started to have real difficulties that afternoon. At one point we went out in the hallway, and Joanne [Wolfe, her primary oncologist] said Mary was very close to dying. The three of us went in separately and said our private goodbyes. I believe I said, "It's OK to go and be with God, because you need to rest. Your body has been through enough." Mary would have kept fighting because she never gave up.

We gathered with Joanne, her nurses and social worker, and Fr. Bob Nee, a Roman Catholic chaplain at Children's Hospital. We encircled Mary's bed and read a responsive prayer. Her sister held her, and I lay next to her, and her father was standing over her. She died in her sister's arms, with all of us close by, touching her with our hands.

After Mary died, we had some time to stay with her –- but that wasn't long enough. I wish I had spent the whole night in her room and not gone home. I would still be there if I could be. I would have held her forever.

Sarah's story: "Don't be sad"

David and Sarah met through their work as physician/educators and fell madly in love. They married in 1998. About nine months later, however, Sarah learned that she had widespread ovarian cancer. She endured two surgeries and many rounds of chemotherapy over the next two years, but through it all, she insisted on living life to its fullest. Before her death at age 44 while in hospice care, she said farewell to some of her most precious possessions: her family, her friends, and their farmhouse in Maine.

Here David –- who was inspired by the experience to specialize in palliative care -– described to me some of her goodbyes:

Sarah had a 10-year-old son by a previous marriage, and she worked to prepare him for her death. She talked about the fact that she was going to die, and she did things with him to create a legacy, like writing cards and making videos of their life together. Sarah told him that if he ever wanted to see her, to just look in the palm of his hand where the lines cross. She said, "You can always talk with me; I'll always be there."

About two weeks before she died, Sarah turned to me and said, "David, I no longer can be your wife. I just don't have the emotional and physical energy. I need your care, but I can't give any more." It confirmed what I already had sensed, that she was reaching the end.

Her mother was with us for the last week, but her dad could not be there emotionally when she was dying. It was Sunday, Feb. 4, and I had a feeling we should invite people over. So I called about 30 people who came over during the day and visited with Sarah. By now she was sleeping a lot, and she would doze off and wake up. She was getting pretty tired around 8:30 p.m., but then she became fully awake and lucid, called her father and said, "Dad, I understand why you can't be here, and I love you." They said their goodbyes to each other. She hung up the phone and fell asleep, and that was the last time she was awake. Then at 2 a.m., she bolted up, had some coughing, and died.

It was so important to Sarah to be able to contribute to the very end and prepare other people –- even to the point where, on that Sunday, she told people, "Don't be sad. It's time for me to leave my body. I will be up there doing my weaving, and I will be happy. And it's your job, all of you who are still here, to continue your lives and be happy. That's what I want." She was also very clear that not only was she ready to die, she wanted it over. And I think that made the goodbyes much easier.

When Sarah and I got together, we thought we had it made. We both had been through a lot of pain while going through divorce. Then we took a philosophical look at things; we both felt we were together to support each other through her illness. So even though she was sick, we went on all sorts of trips -– to Italy, Costa Rica, California, Minnesota, and other places. Part of that was shedding what was not essential in her life. And one of the questions I had was, Why does it take a terminal illness for us to focus on what is most important?

About the Author

Debra Bradley Ruder

I'm a Boston-based writer and editor with a longstanding interest in end-of-life issues. During more than 25 years in journalism, I have met many people facing serious illness and written extensively about health care issues -– whether about the cost of funerals or palliative care services for patients at Dana-Farber Cancer Institute, where I've worked for the past 10 years.

The idea for this blog grew out of a course at Harvard Medical School called "Living with Life-Threatening Illness" that I observed and then recounted in a Harvard Magazine article titled "Life Lessons" (Jan.-Feb. 2006 issue). The course allowed first-year students to shadow patients who were gravely ill for a semester. Toward the end of the course, students were encouraged to say goodbye to their patients and thank them for imparting lessons they could carry into their medical careers. The professors teaching the class also hoped these farewells would spur the patients to have similar exchanges with their own relatives and friends.

As the medical students struggled with these difficult and dreaded conversations, I couldn't stop thinking about goodbyes and their power to help us heal and grow, even when someone we care about is dying. I began collecting stories from people who had a chance to say goodbye and others who didn't -– but who have found ways to honor their loved ones. They are moving reminders of what it means to be human.

Brief bio:
Debra Bradley Ruder is a writer, editor, and communications professional based at Dana-Farber Cancer Institute in Boston. Before joining Dana-Farber, she worked in the Harvard University and Smith College communications departments and was a daily newspaper journalist in Florida and Massachusetts. Her freelance stories have appeared in Newsweek, The Boston Globe, and Harvard Magazine. The "Life Lessons" article that inspired this goodbyes project earned a 2007 Eric W. Martin Award for excellence in medical writing (lay audience) from the American Medical Writers Association.

Serving as medical consultant for the "goodbyes" project is Janet Abrahm, MD, an expert in end-of-life care who has helped thousands of patients at the edge of death, as well as their families. She directs the Pain and Palliative Care Program at the Dana-Farber/Brigham and Women's Cancer Center in Boston and is an associate professor of medicine at Harvard Medical School. A fine teacher and caring physician, she is also is author of "A Physician's Guide to Pain and Symptom Management in Cancer Patients."